You’ll have to forgive me, readers. I know I’ve been a bad blogger as of late. I don’t really have any excuses, I just kind of fell off the grid for a while.
The truth? Along with the everyday mayhem, I’ve been busy worrying about Peanut. Especially the last week. She has an MRI tomorrow. The MRI that will finally tell us, once and for all, if the painful swelling in her hip is nothing or… something.
The “something” of the matter is what has been bogging down my mind. For the first three weeks I was doing okay. I wasn’t thinking about it and we were floating along happily in ignorance land. But, as fate would have it, time didn’t stop. I knew the time would come when I would have to think about it, I just didn’t want to think about thinking about it.
I know, it’s selfish of me. It’s more than selfish, it’s unforgivable. My daughter could be very, very sick and I chose to hide. To run away.
I know why I did it. It’s not an excuse, but I know why. Because I’m tired. I’m just so SO tired. Of everything. I just wanted to feel like we were living a moderately normal life. I wanted to feel like a normal family. I wanted to play every day with my kids. I wanted to take them to the zoo. I wanted to put them down for naps, feed them, change their diapers and deal with hissy fits like a normal family.
I’m jut so tired of the UNCERTAINTY. I’m just so sick and tired of worrying about their LIVES. I’m tired of sicknesses, ailments, disabilities and disorders. I just wanted to live a few normal weeks before we had to possibly get thrown into another whirlwind of scary words like tumor, blood clot, cancer or dying.
Yes, dying. I genuinely don’t think I’m overreacting. I’ll let you in on a secret I only told very few people. When Peanut and Bear were first born, the doctors didn’t know why Peanut was paralyzed. After lots of examination, they came to one conclusion in particular that turned my world upside down. They thought she had SMA. (spinal muscular atrophy) Then as if that wasn’t scary enough, they said that infants born with SMA almost never survived past the first year. In other words, she only had a few months to live, to suffer. Her body would slowly shut down. The degenerative disorder would climb up her helpless, tiny little body and eventually it would reach her lungs. At that time when she stopped breathing on her own, we had to make a choice. We could either continue her life on life support, or we would let her go to God.
We did a test to find out if she had this degenerative disorder. We had to sit and wait for the results for weeks. I had to sit and look at my tiny, fragile little baby girl and all I could think about was that she was dying. It was the most horrible and gut wrenching pain I have ever experienced in my life.
Then, to make matters worse, we didn’t know if she and her sister were identical twins (we still don’t). If they were identical, well, I was watching two of my children fade from this world, little by little, every day. Husband and I had to eventually make the decision whether or not to keep them alive or LET THEM DIE.
Never. Never do I want to experience that kind of pain again. Life had never felt as black and hopeless as it did the first few weeks of their lives. Never had I felt such oppressive sadness, guilt and pain. To have to choose between selfishly keeping Peanut alive, or ultimately being the one to decide her death… I can’t even begin to explain the pain and anguish that comes from a decision like that. Then, there is the conversation that has to be made about possible funeral arrangements. For your BABY. Do we tell her siblings about her when they’re older? Do we erase all signs of her around the house or do we proudly display photos of her short but beautiful life? Do we keep her sheltered and prolong the inevitable, or do we show her the world in what little time she has?
These are questions that I grieve for anyone to have to make. Never will I judge another person’s decisions in these matters. NEVER. I didn’t understand just how heavy every single one of those decisions weigh on your conscience.
Ultimately Husband and I decided to celebrate Peanut’s short but beautiful life for the rest of ours. We never actually decided whether or not we would “pull the plug” if it came to that. It was too painful to think about, much less talk about. We were just taking things one day at a time and loving her as much as our hearts could handle. We decided it wasn’t fair to her if we shut down. She deserved all the love that we could muster.
Finally, the results came back. She didn’t have SMA. All I could do was fall to my knees and cry. I was so thankful, so happy, so grateful! She was going to live! She was going to survive! Both she and Bear! That realization kept me strong through the entire first year. Knowing that they would simply live kept me pushing forward during all of the mayhem at Children’s Hospital.
Their first birthday came and I felt like we were overcoming some invisible barrier. She made it. She survived the first year. She lived. On the outside, I knew she would live, obviously she would live. But deep down, deep down in the darkest part of my heart… I still feared for her.
Which brings me to today. When we went to the girl’s one-year appointment her pediatrician expressed concern about an abnormal amount of swelling in Peanut’s left hip in the groin area. It’s so swollen her leg can’t completely close. It’s always been that way. She decided we needed an MRI to make sure there wasn’t anything serious going on.
My heart almost stopped right then. No. No, we just passed the one-year mark. She should be okay. Why are you still worried about her? She should be okay now! My mind was frantic with denial. I had only barely kept from drowning with the knowledge that she would survive, yet now they’re suddenly not so sure. That fear deep down inside of me felt bitterly validated.
Because I couldn’t handle going through the past pains of losing someone to illness, of thinking my child is going to die, of thinking about the possible wave of hospital visits… I just shut down. I just blocked it all out. I needed to be a normal family for just a bit longer. I needed to experience a normal life, if only for a couple of weeks. I didn’t want to, no… I couldn’t deal with that pain of knowing my daughter may be seriously ill.
Now the moment has come, tomorrow I find out if my fears will be validated or not. Tomorrow I find out if Peanut’s swelling is nothing, or if it’s something. What that something might be, I can only imagine. I’m finally facing the reality of tomorrow. I’m finally opening the emotional flood gates and letting it all in. I’m a nervous wreck. I didn’t sleep hardly at all last night. I just sat there going over every little detail, going over our trip, arrival and check-in. Bracing myself for every eventuality and most of all making sure I don’t forget any comfort items for Peanut.
Because in the end, as scared and worried and sad as I am, I have to be strong for my little peanut. My brave little Peanut who has already faced paralysis, a broken leg, serial casting for her clubbed feet, surgery, tens and tens of injections and blood draws, being shocked over and over for an EMG, skin biopsies and so many more tests and tortures.
My little girl has faced more in one year than many people have to face in a lifetime. The thought that she may have yet another ailment to face just… I just can’t handle it. I really can’t. This should be OVER. Why does she still have to face uncertainties?! Why is this happening?!
I don’t know. I just don’t know. I don’t think knowing matters much anymore. Now, we just have to survive. I pray that tomorrow ends happily and we’re done with this. I’m on my knees begging God to just let her be. But. But… If she comes out of it and we find something of concern, well, we just have to find strength from somewhere that we haven’t tapped into yet.
I pray it doesn’t come to that. I really don’t know what I’ll do.
I ask for your strength and prayers as we face yet another scary moment in our lives as a family. Hopefully the last.